Moving Forward Blog posts from Andersonville Physical Therapy

The Hypermobility Spectrum and Life as a Zebra

by Catherine Lewan, PT, DPT

As a yoga instructor and former professional dancer, I’ve frequently heard from people who wish they were as flexible as I am. But the old adage holds true: the grass really isn’t greener on the other side. During my time as a physical therapist, I’ve learned that the flexibility that earned me praise in gymnastics, dance and yoga actually contributes to my frequent musculoskeletal injuries and chronic pain.

It probably seems obvious that overly tight or immobile muscles may limit your functioning and contribute to aches and pains. Folks with these characteristics likely inherited a tighter collagen matrix and will probably always need to stretch to maintain a healthy amount of mobility. But what many people don’t know is that human mobility exists on a spectrum, and being too far on either side can cause problems. Opposite of those with limited mobility, you have people like me, who are hypermobile. We inherited a looser structure to our connective tissue, and our joints move beyond a normal range of motion. Excess movement can contribute to more wear and tear over time, setting us up for injuries that range from sprains to dislocations.

Often my first indication that a patient is hypermobile is their choice of sitting position. Rather than sit in a chair in my office like the rest of my patients, they opt to sit on my treatment table in full lotus, “W” sit, or even legs straddled across the width of the table.

Catherine in a “W” Sit

After noticing their choice of sitting postures, I often ask these patients if they have any “party tricks.” They usually light up with a smile and demonstrate their “double-jointedness,” or even their ability to “pop” bones out of place. Hearing that something seemingly innocuous and entertaining could be potentially dangerous is often difficult—especially since overstretching one’s ligaments often does not hurt in the initial phases of hypermobility. But it is important to understand that even painless overstretching may lead to injury and should therefore be avoided.

If your PT suspects that your connective tissue is hypermobile throughout your body, they may have you perform the following movements to determine your Beighton Score, a screening tool for hypermobility. Note that these movements should not be painful; if you experience discomfort at any point, please skip that movement.

1. Standing with legs straight, bend forward over your legs. If your palms can flatten to the floor, add 1 to your score.

2. Stretch both of your knees as far as they can go into extension (often called “locked knees.”) If your knees go beyond 180 degrees, add 1 point for each knee that can hyperextend to at least 10 degrees.

3. Straighten your elbows as far as they can go. If they go beyond 180 degrees (often called “double-jointed”) add 1 point for each elbow that hyperextends by at least 10 degrees.

5. Bend your pinky backwards. Add 1 point for each pinky that can bend to at least 90 degrees.

If you scored any points, you have localized joint hypermobility. Those with 4 or more points have generalized joint hypermobility, which is often called benign joint hypermobility, as hypermobility can occur without any symptoms. However, hypermobility does appear to be a risk factor for musculoskeletal issues and chronic pain. The term Hypermobility Spectrum Disorder is reserved for those of us who have a positive Beighton Score and have frequent musculoskeletal pain.

Those with hypermobile bodies often have to learn new habits on their journey toward wellness. Muscles that have to do more work to make up for loose ligaments will understandably get tired, achy and may even feel “stiff.” A common complaint is fatigue and stiffness, and many hypermobile people will develop a habit of “leaning into” their passive tissues in order to conserve energy. Doing so will further stretch these tissues and can contribute to worsening symptoms over time. Although it may take a lot of energy, using active muscles to stabilize these joints will help hypermobile individuals avoid injury in the long run.

Catherine “leaning into” her hip ligaments

Using muscles actively to support posture

Stretching in hypermobile bodies should be limited to tissues that are objectively tight. As a dancer, I was taught to stretch stiffness away. While this approach often makes sense for tighter bodies, I was regularly stretching into ranges that were likely not helpful. For example, when my legs felt stiff as a teenager, I put my foot up on the seat of a chair and go beyond the splits in order to feel a stretch. The splits (legs positioned at 180 degrees) didn’t give me any sensation of stretch—in fact, I often did my homework in this position, as it was a comfortable way for me to sit on the floor! Being assessed by a PT who understands hypermobility can be very helpful to establish what specific areas need stretching, and which areas need stabilization.

If you are generally hypermobile, it is critical that you exercise regularly and keep your muscles strong to make up for the loss of support from your passive structures. Stabilization exercises will avoid over-stretching hypermobile tissues. Muscles are strengthened in a mid-range to provide support and endurance. Proprioception, or body position awareness, is often compromised in hypermobile joints, so it’s helpful to initially work with an experienced professional to ensure appropriate technique with exercise.

Hypermobility is linked to many other medical conditions that are beyond the scope of this article, such as gastrointestinal issues, anxiety, fibromyalgia, chronic fatigue, autonomic nervous system disorders (dysautonomia), fainting (syncope), dizziness and even heart conditions like valve prolapse or aortic dissection. Therefore, it’s important to find medical professionals who understand hypermobility and can help create a proactive plan to minimize risks and improve symptoms.

In medicine, there is a saying: “If you hear hoofbeats, think horses.” It is intended to remind medical professionals not to overcomplicate things. Hypermobility Spectrum Disorders, however, can be complicated. Hypermobile patients are often the exception to the rule. As such, we are frequently referred to as “zebras.” In my own experience, being identified as a zebra was a helpful and necessary step in improving my symptoms and building my support network. Those on the hypermobility spectrum may appear to be healthy and fit, which makes it difficult for others to understand why they often feel tired and unwell. I hope that sharing my story raises awareness for this “zebra” disorder—and helps those who are experiencing it find the support that they need.

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